This world needs you because of your intensity, not in spite of it
This world needs you because of your intensity, not in spite of it
5 ways for autistics to protect ourselves, cope and self-regulate
💕 I am too much to so many, and I always have been 💕
How do you help yourself to survive in this world with your intensity?
It isn’t easy, so please share any suggestions below in the comments.
I, for one, need all the wisdom and support I can get. I will elaborate on all of these at the end, but here’s the shortened version.
Medicate safely and pharmaceutically, and avoid self-medicating with addictive behaviours.
Avoid continual global live news updates.
Be monotropic.
Do what you can to save the world, without losing yourself in the process.
Get amongst your neurokin.
As a child of 1990s London, I was way ahead of my time. Screen addiction is not a new or recent problem for me. Whilst all the other (neurotypical) children in my part of the world were outside riding their bikes and exchanging childish banter, I was at home watching state-of-the-art cable TV. In between the comedy shows I was obsessed with, memorising scripts and reciting dark adult sarcasm, I was captivated by televised charity campaigns depicting emaciated children. Right there in my own home, I was exposed to their world of poverty and famine.
Everyone needed my help, but I felt powerless to help them. I was witnessing their pain, their suffering. I could feel it then and, even now, I can see their faces - large sad eyes shedding tears that ran down their gaunt skin. They looked as though they were not long for this world.
I had nothing to give them but my childhood time and attention. The video edit always cut from the starving parent to the emaciated child and back again, showing me that their own parents felt just as powerless to help them as I did. My heart bled, I was consumed by their pain. I couldn't change the TV channel - I wasn’t going to tune out and ignore them like all the other viewers did. I was their anxious witness.
The voiceover would tell me that I could help them by paying regular donations to their charity. Suddenly on screen, a B-list celebrity was in their village, pumping clean water into a sanitised bucket to much joyous applause. Cut to the formerly emaciated children who were now all running around, laughing, clothed, hydrated. Saved! Their parents were smiling and looking hopeful.
Too late for me though, I was internally clinging on to the initial desolation depicted. The writing team had already hooked me with their fundraising pleads, and I was not going to let go of my stomach-churning desolation so quickly. My heart continued to race, my chest felt compressed. I sucked in a breath that I couldn't release. In my mind, I was in the village before the filming crew descended. I was that parent and that child. I was desperate and powerless.
The common misconception that autistics lack empathy dictates that I should not have had the capacity to feel what those people felt - their pain, their thirst nor their suffering. Their faces should not have conveyed any emotion to me (although their tears may have given it away), unless I had successfully graduated from intensive ableist therapy, to make me learn these human traits. But I didn’t have the therapy because I wasn’t diagnosed autistic.
In the 1990s, empathy and autism were mutually exclusive.
It has taken decades for the researchers to finally recognise female autism for what it really is: deep empathy. Intensely deep empathy - to a paralysing extent - that dominates our experience of being in this world. Fundamentally different from that of our non-autistic peers, yet entirely the same.
It is not our feelings that are different.
It is our experience of them that differs.
Our emotional expression, our capacity to regulate those very same human emotions.
They can cause us to implode in a shutdown, or to explode into a meltdown.
Meltdowns impact those around us, so they are seen and pathologised. They are a quicker route to an autism identification, confirmation, a clinical diagnosis.
Shutdowns affect us internally. They are misinterpreted for laziness, ignorance, moodiness. Often pathologised as some other psychological condition, and many misdiagnosed autistics are on the wrong treatment path for decades.
Whether acting out or acting inwardly, the emotions of others are visceral within autistic people. Regulating that intensity is the challenge. Females are exquisite social maskers, but this can all collapse in early perimenopause. With fluctuating hormones affecting our capacity to mask, our more natural inclination to shutdown may switch to having meltdowns, of greater intensity and frequency. Suddenly we are outwardly affecting those around us, hopefully bringing us nearer to our later in life autism identification.
People ask me why I need to talk about autistic perimenopause all the time. Why do I need to think about it all the time? Monotropism is the autistic ability to focus on one thing, striving to know all there is about it, and regulating by experiencing flow and calm when immersed in your monotropic focus area (also known as a special interest, or “spin” for short). Mine is autistic perimenopause.
I struggle with people who don’t think intensely, who don’t question everything. People accepting the status quo. Who can turn the TV over to protect themselves from other people’s emaciation and hopelessness. Distancing themselves emotionally, yet chastising and pathologising me for feeling things so intensely.
These days, I don’t watch a lot of TV, but I am on Facebook far more than is good for me. Last week I asked a local friend whether she had noticed that more people are going missing these days. Or were people just getting more astute at using social media to share missing person posts, widening their reach and their search? My Facebook algorithm is now constantly showing me missing person posts, which I immediately share.
I read the posts in full, I look to where they live, and inwardly grieve for the community that has (hopefully temporarily) lost one of their own. I wonder whether that missing person is alive, how their parents and children are coping in their absence. Is their community getting adequate mental health support? (I doubt it.) What drove them to go missing, or might they have been snatched? Will they be found alive, and soon? Did they have any mental health interventions before this? Were they known to local social services? How could this have happened? Why aren’t we all taking better care of our own people? It is one thing to turn the TV channel over to protect ourselves from emotional harm (“Don’t watch it, Sam. There is nothing you can do to help.”) It is quite another to allow this suffering to go unnoticed on our own doorsteps.
How and why others don’t experience such intensity is beyond me.
Despite all of this, I see our intensities as significant aspects of the neurodivergent life experience.
We are not too much.
We keep people accountable.
We show our authenticity boldly, with passion and with love.
As a population though, we are vulnerable. Autistic people are susceptible to exploitation and manipulation.
We also have a propensity towards co-occuring mental health conditions, chronic illnesses, executive functioning challenges and other challenges. Co-occuring anxiety and depression can lead to self-harm, addiction, suicidal ideation. People often choose self-medicating to numb these intensities.
This world was not made for us, and we don’t always feel like we belong here. That’s why we need to be in community with our neurokin.
Autistic perimenopause can be a time of mental health crisis. It should be treated as such, yet receiving a female autism diagnosis and having a doctor recognise the menopausal transition for what it is can be extremely challenging. We won’t always know we are in autistic perimenopause before it has started ruining life as we knew it.
Self-identifying your regressive states, alongside hormonal and functioning fluctuations, is half the battle won.
Knowing that you are still sane - this isn’t early onset dementia - can be reassurance enough to protect you from self-harm and suicidal ideation. Hormonal depression is dangerous. We feel everything intensely, and are hypersensitive to our environments.
How do you help yourself survive in this world with your intensity?
It isn’t easy, so please share any suggestions in the comments. I for one need all the wisdom and support I can get. I will start us off…
Medicate safely and pharmaceutically, and avoid self-medicating with addictive behaviours. Well, you do you, but are they going to help you in the long term..? If you suffer from awful rumination, try an SSRI. If you are insomniac and have The Rage, try HRT. If you are addicted to everything, research ADHD and try stimulant medications.
Avoid continual global live news updates. True story: I watched the Japanese tsunami footage live, was very late for work as I couldn’t look away, moved to Aotearoa NZ where I now live in a tsunami zone, and have to pop a Propranolol every time we have an earthquake. This ties in with the above advice relating to medication. Yes, I take a daily SSRI to buffer the tsunami fear. It just so happens that I have a fuckton of chronic anxiety issues, and a very low dose of Sertraline helps me with every single one! This has improved my quality of life no end, as has no longer paying attention to the news.
Be monotropic. Lean into your “special interest” (ick, let’s call it our “spin” instead. Yay!) and make it your focus. It is self-regulating, safe, reassuring and all yours.
Do what you can to save the world, without losing yourself in the process. We are innately social justice warriors - there is no getting away from that. We can advocate, campaign, support charities, share missing person posts, and then we need to go back to our spin (yay!)
Get amongst your neurokin. We love you because of your intensity! We don’t want small talk about inane peripheral topics. Pull up a chair and tell us all your trauma!
💞
You will find us here in the chat:
Thank you for your writing. I am still finding out if I am autistic. My psychoatristndid a quock questionnaire and said my score was high to qualify, but he wasn't clear about that being an "official" diagnosis. I'm not sure what im missing. We have good conversations, butmit often seems like I leave without some important facts. I have adhd and was.late diagnosed (2 yes ago). There's alot about autistic.elexperiences that i relate to as well. The.more I stop policing my behaviour and appearance the happier I.am, the less self-conscious I am. but I also notice that my behaviour is becoming less and.less like most other people in the room. Unless they're neurodivergent! Haha. I feel happy about that. I feel happy about being the way I am and not hiding.I was previously.diagnosed with BPAD II in 2008, have had major.depression, severe social amxiety and drug induced.psychosis. Increasingly I doubt the accuracy of the BPAD II assessment as adhd and autism feel a more accurate description and have provided more helpful insights into the functional challenges i face(d). But.sometimes i doubt I have autism bc I can be really really good at social Interaction at times, but.i also know how hard I have.practiced and.for.how long, and how.much i have agonised over every little word, and I have built my repertoire for 1:1 socialisong up quite.well.. but still, there are times when another person will join in and all thoughts leave my head..I have nothing. Its.empty up there, even though I close my eyes and try to call something down. I try to speak - the.words come out broken, stuttered, and disordered. I have.to close.my eyes or look away.so i can concentrate.
I am 48. I know alot.of neutodivergent people.who have done deep dives into the research, and become experts on the.medications and the presentations, i find it overwhelming, and have been avoiding it. My capacity for sitting still and reading is very small these days. So I like to listen to people who have done their own deep dives. I will get there, but.probably.slower than everyone else. Intakenbite size chunks of information and then move away and digest.
I have prohibited myself from becoming fully immersed in an interest (spin is such an excellent phrase!) and stopped myself from becoming obsessed. I don't know why, but I thought it was wrong. Although maybe it's related to being diagnosed with BPAD II - intensity, obsession, feelings of joy and happiness even! I learnt to police myselfnfornthese things as they.might be signs of mania, i believed. Inthinkcinwas wrong. Inthinknthe.psychiatrists and psychologists were wrong.
This year I have opened up to music, which I always wanted to do, and I'm learning an instrument and seeing.live music at least once a week and trying to support local musicians by writing positive reviews and sharing theolir events with others. I lovenit.so much..imnthenhappiest ive ever been. Music is so interesting and exciting and it can be political and address social issues, as well as express all the emotions.. I have found rhe same as you, that I need.to take care of myself in relation to how deeply or for how long i focus on social justice issues and how much I identify with the suffering in the world.. i try to go lightly. And remind myself that bad things are.part of life and I can't fix it.all. I stay hopeful that unjust systems will erode away and new healthy ones will flourish. I accept.my limitations and celebrate people who are able to do more of the heavy social jiustice.work that i cannot. It's not an excuse. It's real. I burn out or shutdown, have SI, then I'm no help to anyone - not myself, my kids, my neighbours, my girlfriend, or any of the billions of people in the.world. I don't know if I am perimenopausal yet. I probably am and it's time I find a good GP to talk to about it.
I like your suggestion of using your spin for relaxation and calm.
I like to think that even small actions/interactions, little things I do each day in my local.community, make a contribution to a kinder, more just, world. Thank you for listening and thank you.for your substack.
Your writing is some of my favorite. Very informative, relatable, and makes me think and think some more. Thank you for taking the time to put stuff like this out in the world. It truly makes a difference.